La lotta con la fibromialgia è che ogni giorno è qualcosa di nuovo. Il mio quotidiano è una battaglia costante su una pista per qualsiasi terreno; pieno di pericoli, non ho idea di dove sto andando o di cosa colpirò dopo. Sono in una rotonda infinita di sintomi. Ogni ostacolo viene calcolato per evitare il rischio, ma il risultato non è mai prevedibile, non importa quanto ci provi. Le variabili non contano.
Esistono oltre 100 sintomi di fibromialgia tra cui:
- Dolore muscolare cronico, spasmi muscolari o senso di oppressione
- Grave affaticamento cronico e riduzione dell’energia
- Insonnia o risveglio sentendosi stanco come quando sei andato a dormire
- Rigidità al risveglio o dopo essere stati in una posizione per troppo tempo
- Difficoltà a ricordare, concentrarsi ed eseguire semplici compiti mentali (“nebbia fibro”)
- Dolore addominale, gonfiore, nausea e costipazione senza problemi gastrointestinali da segnalare
- Tensione cronica o emicrania
- Sensibilità a una o più delle seguenti condizioni: odori, rumore, luci intense, farmaci, determinati alimenti e freddo
- Grave ansia e depressione
- Intorpidimento o formicolio in viso, braccia, mani, gambe o piedi
- Una sensazione di gonfiore (senza vero gonfiore) nelle mani e nei piedi
- Tenerezza mascellare e facciale
- Costocondrite, infiammazione della cartilagine che collega una costola allo sterno
- Continua così. Stanno ancora meglio. Come l’allodinia, un’accresciuta sensibilità al tatto, che provoca dolore per cose che normalmente non provocherebbero disagio, come indossare abiti.
Per me, faccio fatica con dolore e fatica. Singolo. Giorno. Non è solo un piccolo mal di testa o sono stanco. Sono dolori di tutto il corpo come se avessi l’influenza. È fatica come se non dormissi da 48 ore. Questo è tutti i giorni. Questa è la mia base costante. La mia normale esistenza sei tu in una giornata di malattia. O i postumi della sbornia. È così che vivo.
Per riferimento, ho circa vent’anni, sono piccola e non sovrappeso. Sembro perfettamente sano.
Ma gli altri sintomi sono la parte più difficile. Mi attraversano il corpo come se fosse un flipper; posizione e gravità in costante cambiamento. Spesso dolori acuti e veloci; così in fretta che riesco a malapena a riprendere fiato prima di andare avanti. Quindi, il dolore dura per ore alla volta; ad esempio, le mie gambe spesso hanno la sensazione di avere pesi di 100 libbre legati a loro, che mi appesantiscono ad ogni passo.
Mentre faccio commissioni di base, mi colpisce come una tonnellata di mattoni che si trasformano in gocce di sudore e poi mi surriscaldo; così difficile che devo “fare una pausa”, perché comprare più di una semplice carta igienica su Target è troppo fottutamente difficile. 8 ore di lavoro nel mio lavoro a tempo pieno sembravano correre una maratona (dovevo smettere di lavorare).
La lista potrebbe continuare all’infinito. Ho rassegnato le dimissioni solo dicendo: “Non mi sento bene, grazie per avermelo chiesto” invece di cercare di spiegare una delle innumerevoli mali che sto provando in questo momento.
A proposito di momenti, è tutto ciò a cui riesco a pensare.
Come, proprio ora, in questo momento di dolore in cui esisto, a letto, cercando di distrarmi da “esso” (il dolore).
Penso sempre al futuro e calcolando: “Come reagirò? Che cosa accenderà (è così che descriviamo “quando la merda colpisce il fan”)? Quanto tempo impiegherà il transito dalla posizione X alla Z? Una volta arrivato in posizione Z, dovrò partire in qualsiasi momento? Quanta energia devo usare quando ci arrivo? “
Tutto è un fottuto calcolo perché c’è un bug nel mio database.
Alzati ogni 45 minuti per ridurre il livello di dolore del 5%. Cammina almeno 4000 passi per ridurre il livello di dolore del 10%. Riposare dopo 20 minuti di cammino. Rimani a letto per almeno 9 ore per funzionare al 25% circa il giorno successivo.
Ricaricare. Riposo. Cura di sé.
Provo a prevedere ciò di cui ho bisogno per funzionare.
Ma non c’è più alcun modello nel mio codice.
Tutto è sconosciuto
Al lavoro, prendo in considerazione l’idea di dire a un collega di più sul perché ero fuori “malato”. Mi chiese, curiosamente, se avessi capito cosa mi faceva star male. Ho risposto scherzosamente, “a volte mi ammalo”. Ma la parte di me che brama il sostegno e l’empatia mi ha implorato di dire la verità. La cosa sulla fibromialgia è che non è come le altre cose. La cosa sulla fibromialgia è che nessuno sa CHE COSA È.
Il dolore da fibromialgia proviene più dal cervello e dal midollo spinale che dalle aree del corpo in cui qualcuno può provare dolore periferico. Si ritiene che la condizione sia associata a disturbi nel modo in cui il cervello elabora il dolore e altre informazioni sensoriali. – Dott. Daniel Clauw, American Pain Society americanpainsociety.org
La risposta più comune è un riconoscimento rimosso due volte: hanno una conoscenza (spesso di sesso femminile) o la loro “amica di mamma” lo ha avuto. La conversazione si interrompe. Non è come la SM o il morbo di Parkinson o l’artrite reumatoide o l’influenza maledetta. Le persone sanno cosa sono. La gente lo capisce. Sei malato.
La fibromialgia è una classe a sé stante ed è diversa per tutti.
Il mio discorso sull’ascensore di solito va un po ‘come questo, “Ho un disturbo del sistema nervoso centrale che causa diffuso dolore cronico e affaticamento”. Cerco di farlo sembrare cattivo, perché è cattivo.
Perché voglio che le persone prestino attenzione.
Voglio che le persone sappiano della fibromialgia e di ciò che fa; il potere che detiene per distruggere le vite mentre è in agguato nell’ombra. Si maschera come altre malattie, quindi ci sottoponiamo a una serie di test che la nostra assicurazione non copre. Trasforma i miei amici e la mia famiglia in scettici. Fa pensare alle persone (e mi fa sentire) come se fossi un bugiardo, un falso e un pigro. Cerca di prendere il mio lavoro, le mie relazioni, il mio amore e la passione per la vita.
La fibromialgia è uno stronzo e voglio che tutti sappiano:
Non sono malato. Ho la fibromialgia.
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